Holly Simione does not leave the side of her daughter, Elizabeth.
While wearing a mask and gloves, Simione is quarantined from the rest of her family and sleeping on an air mattress in the hallway near her daughter’s bedroom. It’s all an effort to keep Elizabeth safe amid the coronavirus outbreak.
The 18-year-old has severe physical and developmental disabilities. During an online Zoom interview, Simione took the NBC10 Boston Investigators on a tour of her bedroom, which is equipped with all the things you’d expect to find in an intensive care unit at the hospital: a ventilator, monitors, a ceiling lift and shelves filled with medication and supplies.
"There is constant care," Simione said. "She may be 18, but she's more like an 80- or 90-year-old person."
The elaborate medical setup allows Elizabeth — and about 800 medically fragile kids in Massachusetts — to live at home instead of an institutionalized setting. It’s made possible through a MassHealth program that works with home health agencies to provide skilled in-home nursing for families.
"We typically have nurses here 20 to 24 hours per day," Simione said. "We are thankful for the program. It's what we have to do to be a family and have normalcy.”
But these are not normal times. The coronavirus pandemic is creating a new challenge: the home health agency that provides nurses for Elizabeth is dealing with the same shortage of personal protective equipment — or PPE — affecting health care workers across the country.
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"They have asked me if I have any masks or gloves," Simione said, adding that she has already lost some nursing shifts over lack of gear. "They are having a tough time getting them, like everyone else. It's why we reached out for help."
Dan Shannon is the executive director of the Massachusetts Developmental Disabilities Council, an agency that provides educational training, connects constituents with services and advocates for better policies to serve people with disabilities.
Shannon contacted NBC10 Boston when he learned of Simione's dilemma.
"There are some things out of our control," expressed Shannon. "There are just no resources to get them done. It's extremely frustrating."
Shannon is hopeful that new technology that can clean protective gear at medical facilities, allowing for them to be reused, will free up some of the precious gear for others in need.
"It all comes down to PPE. If people need it and can't get it, the risk is higher," Shannon said.
A MassHealth spokeswoman said the Department of Public Health is actively working with the home health industry to assess PPE supplies and work towards solutions to address the ongoing challenge. Agencies can also request PPE through the State's request form.
For now, Simione is rationing protective gear at home. A handful of face masks labeled with nurses' names in Ziploc bags hangs on a door in Elizabeth's bedroom. Simione wonders how long they will last.
The Somerville mom's fear is a shortage of PPE, medical supplies or in-home nursing care will land Elizabeth at Boston Children's Hospital. She would require a critical level of care at a time when hospitals are bracing for an anticipated surge of coronavirus patients.
"We don't want to clog the system. We don't want to take a bed from someone who needs it," Simione said. "Help us be safe at home so we don't create more of a dilemma for the pandemic."
